Chronicling the adventures of one amazing, funny, sweet, outrageous young lady, who happens to have CHARGE syndrome!

Monday, October 26, 2009

Health Tests - October 2009

This post is to celebrate Kennedy's continuing great achievements in middle school. Her tenacity, great attitude, and willingness to try hard at school is just a testament to what an amazing person she is. There is, however, another reason why I'm writing. It is because of so-called professionals who are ignorant about CHARGE syndrome giving out bad information to families who have young babies or children with a recent diagnosis.

Twice this week, there were messages on the CHARGE listserv about bad information. The most recent was that a hearing specialist told a mother of a 13 month old girl that most people with CHARGE never talk and that they don't progress cognitively beyond the infant stage. As the parent of a child with CHARGE, I was so offended; I can only imagine what individuals with CHARGE think about comments like this. Those of you who know me can imagine my response to this: I was outraged!!! I gave the mom a lengthy response but I'm just so offended when "professionals" give out information like this to parents when, in fact, they really haven't done a modicum of research on the topic. I asked this parent to ask the hearing specialist where she got that information; I'd love to see the reaction on that.

This just really underscores the need for more public awareness about and more accurate information out there about CHARGE syndrome so no parent has to hear ridiculous prognoses like this. In that vein, I will post these 2 tests that Kennedy has taken in Health on the male reproductive system and on puberty changes between males & females. The first shows how she had to learn to accurately identify all parts of the male reproductive system; the second is deciphering which puberty changes occur in both females and males. She had to read and do these independently. I challenge most men to accurately label their own reproductive system and Kennedy worked very hard to study and did great, scoring A+ on both. Secondly, I will leave a link to our 2nd Annual Charge It for CHARGE campaign, which helps support the CHARGE Syndrome Foundation and its mandate to help families, assist research, and provide (correct) information to professionals about CHARGE. If you would consider making a donation to our family donation page, it would be greatly appreciated.

*Note: You can click on either of these photos to enlarge them.

Male Reproductive System Test (she also knows what each part does; that test is next Friday):

4 comments:

p.s. I am 100% behind you in what you said as far as bad info.... I got to see once again this year at the Charge retreat for Texas Chargers a 27 yr old that is now a senior at Texas Tech College! He was our star Charger this year and stood up in front of everyone and talked about himself. It was amazing. These children can never be under estimated!!

First, huge congratulations to Kennedy! Another stellar achievement to motivate and inspire all of our children... regardless of whether they have CHARGE or not! Middle school can be such a difficult time... for anyone... and Kennedy is a shining example of how to make that transition successfully!

As for the statements made by the medical professional... ugh. Can I just hop on that soapbox with you? I get so frustrated with the ignorance that is out there... irritated that we, as parents, are responsible for educating the medical professionals in so many areas. More than anything, it's maddening that they spout off "statistics" without providing any support or concrete information.

The statement by that professional wasn't grounded in any data and yet, somehow, this happens all the time.

As we know, there is a huge range in CHARGE Syndrome... so many variables to differently affect each individual. Never once have I looked at Gracie and believed in any (ignorant, unsupported or even well-intended) statistic we've been given. I chose, the day she was born, to end statements about the things she wasn't/isn't doing with the word "yet." It has been my mantra and I stand by it today. It's empowering for me and, thus, empowering for Gracie. I encourage any new parent to do the same...

How dare any professional (or anyone else, for that matter) put limitations on our children and rob them of hope and potential? Like you are with Kennedy, I am blown away (on a different level, of course) with what Gracie accomplishes.

To prevent this from continuing to happen, it's imperative that we all find ways to help support the foundation and its efforts. Imperative.

(Sorry... this should have been an email to you or a post on my blog. I didn't keep it short!)

As for the post regarding professionals... I make sure I send pictures updates and progress to all our professionals to make sure they are constantly reminded of all she can do... because early on it was rather bleak and comments to consider switching off ventilation horrified us !! Nobody knows the strengths of these children like we do, every day is challenging but so defiant to succeed !!

WELCOME!

Today is...

Team Kennedy CIFC

What is CHARGE Syndrome?

CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.

Continued research is needed to help us understand the medical and developmental challenges facing individuals with CHARGE. Better understanding will lead the way to interventions, therapies and educational strategies which can help people with CHARGE syndrome overcome many of the obstacles in their lives.

One of the hidden features of CHARGE syndrome is the determination and strong character these children display.